Stanchfield woman recalls frustration with Lyme disease and the docs who missed it

This article by Jon Tatting came out in The Post Review this past Wednesday. It profiles a Minnesota woman who contracted Lyme disease in 2007. Her story is all too familiar. She never saw a bulls-eye rash so doctors dismissed the possibility of it being Lyme disease. She began to develop severe neurological problems within a few months.

The top clinic in the country, the Mayo clinic, wound up misdiagnosing her and misled her because she never saw the tell-tale rash. Fortunately for her, she had the good sense to learn about Lyme herself.

She eventually got a positive Lyme test result. The subsequent antibiotic treatments eventually put her on a path to recovery.

I am pleased the patient, Tina Kabbage, had the wherewithal to take matters into her own hands and that she is on the road to recovery. And I am extremely pleased that she shared her story with everyone.

Excerpted from the The Post Review ( Posted: 06/30/2010 )

Tina Kabage is living proof that one can have Lyme disease without the classic bull’s eye rash or a positive test result.

After receiving several tick bites in the summer of 2007, the Stanchfield woman had no indication anything was wrong other than what seemed to be the flu, which resolved.

It was August when other symptoms followed, ranging from muscle twitches and aches, nerve pain, nausea, extreme fatigue, sensitivity to light, confusion and insomnia. She blamed her occupations as a waitress and freelance artist, hours of standing at the restaurant and in her home studio for the pains in her legs and feet.

As her symptoms and pain escalated, Kabage was forced to quit her jobs and begin a journey of frustration with doctors who could not figure out her mystery illness, who kept ruling out the disease she knew she had.

Kabage’s story is not a unique one among the growing number of Minnesotans who develop the tick-borne disease, which is considered a high risk for those either living or spending time in mainly the forested areas within the east-central region, including Chisago and Isanti counties, according to the Minnesota Department of Health

By December 2007, Kabage’s condition was not getting any better. Walking was difficult. She had heat intolerance, insomnia, brain fog (not thinking clearly), neurological symptoms and the left side of her face was numb, like it was full of novocaine.

“All along I thought it was Lyme,” said Kabage, who began to research the disease on her own time.

She began making numerous trips to the Mayo Clinic in Rochester, where she saw “the top neurologist in the country,” she was told at the time. “He was called the MS guru.”

“He had no idea what was wrong with me,” Kabage continued. “His diagnosis was Chronic Pain Syndrome. I came all the way to Rochester to hear that. I felt defeated. I told him he was wrong.

“Due to the severity of my symptoms, something was not showing up on the testing,” she added.

So in her final conversation with the “MS guru,” Kabage asked about Lyme when MS was ruled out. His response: “You never had a bull’s eye rash and the Lyme test was negative.”

Kabage was non-functional by 2008. She couldn’t even peel an orange with her crippled hands. The left side of her face was slumped, as if she had Bell’s palsy, with her hearing and vision affected as well. She was having hallucinations. Yet is was the nerve pain that was most debilitating for Kabage.

“I was struggling to survive day to day. I don’t know how I did it,” she said. “As I was passed from doctor to doctor, insisting that something was making me sick, two physicians recommended I have a psychiatric evaluation because I didn’t have Lyme, my test was negative.”
Self advocacy
It was time to take matters into her own hands. With the help of her husband, Kabage began to play self-advocate by researching library books and site after site on the Internet.